PNES, or, Psychogenic Non-Epileptic Seizures (used to be called “pseudo-seizures”, but they’re not “fake seizure”, so the terminology changed to PNES, and now we’re trying to change it to what it really is, dissociative seizures) are a part of my daily life now. Whenever you hear the term “dissociation”, it essentially means that your brain needs a little vacation. So it goes somewhere else, good or bad. It’s what flashbacks are, for the most part. PNES is a condition that’s about as common as Multiple Sclerosis, if that gives you a sense of numbers, but it’s also under and over-diagnosed, so I guess the numbers come out in the wash.
The list of things that I CAN’T do is pretty much how I live my life now. I can sit here on my big butt and write. It might take me forever to process the words, but I get it done. Anyhow, follow the long list of No’s:
I Think I Owe You an Explanation
Here’s a way I can explain living with someone with PNES. It’s like Traumatic Brain Injury to the language part of the brain, (stuttering, losing words, being non-selectively mute), the part that understands the construct of time, memory, and, in a way, reality. When I say “reality”, I’m meaning, the feeling that you are merely outside your life, looking in, common in PTSD as well. So, to sum up that part, PNES can be viewed as someone who has both TBI and PTSD. Often, PTSD is a co-occurring disorder with PNES, but many people didn’t get the memo about having PTSD before their seizures began.
I got the memo, took it to a community mental health center, was denied treatment, so I stopped trying to get better and did what I always do…filed it away under repression and kept on going. “Going” worked well, for almost two years, as it had my whole life. Then, after being prescribed a new medication from a rheumatologist (a completely narcissistic Dr., btw) for restless leg syndrome. First night, worked great. Second night, didn’t do shit. Third night, I started seizing. We went to the ER and they said to stop the medicine and take some Benadryl. So we did.
The seizures continued. (And, FYI, when your girlfriend continues to have violent seizures with confusion and returns to the same hospital, you just mention “stroke-like” behavior and you get a pass back right away. Thanks, babe.) EEG, blood test this and that, dangerously removing all meds at once without tapering any, visit to the neurologist and another neurologist, and TADA! You’re fucked!
Welcome to a diagnosis with little presentable research, little knowledge from mental health professionals (let alone any other kind of medical professionals), and few resources to go on. (It’s not completely hopeless though, remember that.) Get a good therapist that you trust, same with a psychiatrist (psych meds might not necessarily do anything, but you’ll want a psychiatrist, just in case you can find some relief). And don’t forget to join some PNES Facebook group sites (they also have them for caregiver’s as well) are a life-saver because there is always someone awake to answer your questions. Here are a few resources via Amazon (I’m getting nothing in return for recommending these products):
Thanks for reading these personal and (hopefully) informative little journal entries. I hope it helps you or your family and friends figure out what’s happening and how to proceed. Thanks again. I hope you feel free enough to share or comment on what’s going on with you or your loved one. Most of all, I hope that you acquire a twisted sense of humor with this disorder. If not, I’m always here: firstname.lastname@example.org.
All pics are from Adobe Stock, Freepik, and title pic designed using Canva.